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Neuroethics 2024
INS Annual Meeting
Baltimore USA + Virtual
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Mind Meets Art: Neurology, Research Participation, and Social Justice

In this panel discussion we draw on our research and experiential knowledge to reflect on the challenges and opportunities of participatory and social justice arts to disrupt dominant neurological disease narratives. We discussed how various artistic media and formats shape co-creation processes and the representation of lived experience in their products — as well as the tensions and potentials of transdisciplinary collaborations.

Speakers:

Recording

 

Event

Neuroethics 2024

  • Date: Wednesday, April 17, 2024
  • Start Time: 11:00 a.m. EDT / 15:00 UTC
  • Duration: 60 minutes

Agenda

  1. Presentations / 30 minutes
  2. Discussion / 15 minutes
  3. Q&A / 15 minutes

Resources

Supplemental Readings
References
  1. Parsons, J. A., Gladstone, B. M., Gray, J. & Kontos, P. Re-conceptualizing ‘impact’ in art-based health research. J. Appl. Arts Heal. 8, 155–173 (2017).
  2. Kontos, P. et al. Dancing with Dementia: Exploring the Embodied Dimensions of Creativity and Social Engagement. Gerontologist 61, 714–723 (2021).
  3. Bar, R. & Herron, R. Future directions for collaborative arts-based ageing research. Danc. Ageing Collab. Arts-Based Res. 144–156 (2022). doi:10.4324/9781003260691-10
  4. Inouye, S. K., Ganguli, I. & Jacobs, E. A. Enhancing Aging and Ending Ageism. JAMA Netw. Open 4, e2117621 (2021).
  5. Boydell, K. M. et al. Arts-based health research and academic legitimacy: transcending hegemonic conventions. Qual. Res. 16, 681–700 (2016).
  6. Stites, S. D. et al. The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer’s stigma: A vignette-based experiment. Soc. Sci. Med. 292, (2022).
  7. Kontos, P. et al. Raising the curtain on stigma associated with dementia: fostering a new cultural imaginary for a more inclusive society. Crit. Public Health 30, 91–102 (2020).
  8. Tsiang, J. T. H. & Woo, B. K. P. The stigma of Parkinson’s disease: development and implications. Diagnosis and Management in Parkinson’s Disease (Elsevier, 2020). doi:10.1016/b978-0-12-815946-0.00017-x
  9. Dupuis, S. L., Kontos, P., Mitchell, G., Jonas-Simpson, C. & Gray, J. Re-claiming citizenship through the arts. Dementia 15, 358–380 (2016).
  10. Rossiter, K. et al. Staging data: Theatre as a tool for analysis and knowledge transfer in health research. Soc. Sci. Med. 66, 130–146 (2008).
  11. Colantonio, A. et al. After the crash: Research-based theater for knowledge transfer. J. Contin. Educ. Health Prof. 28, 180–185 (2008).
  12. Phillips, L., Christensen-Strynø, M. B. & Frølunde, L. Arts-based co-production in participatory research: harnessing creativity in the tension between process and product. Evid. Policy 18, 391–411 (2022).
  13. Christensen-Strynø, M. B., Phillips, L. & Frølunde, L. Revitalising sensualities of ageing with Parkinson’s through dance. J. Aging Stud. 59, (2021).
  14. Kukkonen, T. & Cooper, A. An arts-based knowledge translation (ABKT) planning framework for researchers. Evid. Policy 15, 293–311 (2019).

Keywords

Patient perspectives, Social justice, Art, Medical humanities, Neurodisability, Research practice, Science communication, Patient participation, Patient involvement

Speakers

Maria Bee Christensen-Strynø, PhD

Assistant Professor
Section for Art History and Visual Culture
Department of Arts and Cultural Studies
University of Copenhagen, Denmark

Maria Bee Christensen-Strynø’s expertise spans critical and cultural disability studies, aesthetic communication, visual culture and dialogic communication. 

Pia Kontos, PhD

Senior Scientist
KITE Research Institute
Toronto Rehabilitation Institute
University Health Network

Professor
Dalla Lana School of Public Health
University of Toronto

Pia Kontos’s research draws on critical and relational theories and uses critical and arts-based methodologies to promote personal and social transformation in dementia care settings.

Naila Kuhlmann, PhD

Postdoctoral Researcher
School of Physical and Occupational Therapy
McGill University

Affiliated Researcher
Centre for Circus Arts Research
Innovation and Knowledge Transfer (CRITAC)
National Circus School

Naila Kuhlmann led the co-creation of performances on the lived experience and scientific research of Parkinson’s disease and dementia (Piece of Mind).

Stefanie Blain-Moraes

Associate Professor
School of Physical and Occupational Therapy
McGill University